Whodathunk the nightmare of still searching for an apartment in New York City would be a welcome diversion from my life's real drama'deciding whether to start taking my AIDS meds. I've been procrastinating over this decision since September 2003 while I was enduring the shock of learning that after 13 years of coping with HIV, I had progressed to an AIDS diagnosis. Taking the drugs might be a no-brainer to some, but for me, the answer ain't so easy.
For every Lazarus tale I've heard from my AIDS-med'taking comrades, there's been a warning from a survivor of the debilitating side effects. My current doctor in Manhattan says I should follow her recommendation'choke down the drugs'but I've been fighting that default position by health care providers ever since I was diagnosed back in Chicago in 1990, way before viral load tests or protease inhibitors were federally approved.
It took me two years to regroup and follow up with a physician at a Chicago public-health facility, and on my first and only visit there the doctor told me that AZT was my best lifesaving option. I took pause, though, because I'd known or heard of too many boyz in my hood who had died early on while taking the treatment. Rumors perpetuated by the Nation of Islam and local holistic therapists said that blacks were dying because of the drug's toxic side effects. Weighing a choice between listening to my doomsayer doctor'who predicted that, even taking AZT, I wouldn't live beyond five years'or following my gut instinct, which said not to, the decision seemed obvious. I didn't see a doctor for another five years.
In 1997, heartened by Magic Johnson's continued optimism about living long with HIV, I started over at a new clinic. The new drug cocktails trumpeted in the media also compelled me'but I wasn't sold. It wasn't long before my doctor and I were in a deadlock. I balked at his insistence that I immediately begin the barely approved therapy; he thought I was stubborn for not accepting the long list of potential side effects as par for the course. Some veterans at an African-American HIV support group that I attended labeled my actions as classic denial, but I saw it as cautionary. No matter, I had numbers on my side: a T-cell count of 800 and a viral load of only 8,000. According to government guidelines, meds were still unnecessary.
I felt vindicated by my stance in 1999 after switching to a third clinic. I'd reached the holy grail of AIDS care'an undetectable status'and did so while remaining treatment-naive. On my progress notes my nurse scribbled that I was 'stable and possibly a long-term nonprogressor,' but even my being a medical anomaly didn't make her bat an eyelash. Whatever I was experiencing, she shrugged, was probably temporary and not worth her interest or enthusiasm. Already leery of the medical establishment, I had a hard time trusting her judgment after that or following her recommendation to start taking meds when my virus rebounded.
That nurse was the last health care provider I saw before I moved from Chicago to New York in 2000. Since then it's been a slippery slope. My T-cell count has plummeted to 40, a dangerously all-time low, and my viral load has spiked to 230,000. I've argued against taking meds for so many years that now, with my numbers stacked against me, I find it hard to stop. I keep weighing potential side effects against the ill alternative'opportunistic infections'and I can't decide which is worse to my mind. I just can't decide.
Whitfield is one of the nation's leading journalists reporting on AIDS among African-Americans. A frequent Vibe contributor, he is based in New York City.
